Few resources are available to assist caregivers, especially partners who are also caregivers. Here are some things to consider when navigating this tricky relationship
When someone sustains an SCI, most of the information that is shared focuses on the injured person. There are fewer resources available for partners who become caregivers. Getting in touch with professionals who can provide support for partners is very helpful. After all, an injury impacts family and friends too.
Aside from one-on-one professional support, there are other things you as a partner can do to navigate the changes that an SCI brings to a romantic relationship. While it is recommended that the roles of caregiver and partner be fulfilled by two different people, the reality is that most spouses do become caregivers for their partners. This is especially true in rural communities.
Do not be a caregiver first – be his or her partner first. Be mindful of the fact that many people can fill the role of caregiver, but what you offer as his or her partner is unique. Making time for sex and intimacy should be a priority, as it is easy to neglect the emotional side of a relationship when caring for your partner.
As a partner to someone with an SCI, you will also require assistance from time to time. It helps to know on whom in your support system you can count, and get them involved as soon as possible. This way, if you require their help at some crucial point, they are already clued up.
Having a life separate to your partner’s can also help you to recharge emotionally. You are more than your partner’s caregiver and can’t be an effective caregiver unless you take care of yourself, too. It’s not selfish to indulge in self-care and put yourself first at times.
It is equally important to remember that you and your partner are in this together. It is inevitable that there will be times where one (or both) of you will feel frustrated, and it is easy to take this out on each other. You may have to remind yourself that your fight isn’t with your partner as much as you are fighting together against barriers.
You can expect that people will ask a lot of questions. This can sometimes be out of ignorance, as an attempt to help or maybe just because they are curious. Regardless of the reason for the questions, when you expect them, it is easier to prepare responses and then minimise the frustration they sometimes bring.
You’ll need to adjust to your new life, your new roles, and the presence of new people and professionals in your life. Peer supporters, physiotherapists, occupational therapists, doctors, nurses, psychologists and maybe even lawyers will become a part of your team in caring for you and your partner. They are there to help, so reach out when you feel the need to do so.
Finally, it can be immensely valuable to join a community of people to whom you can relate. People who have been through similar experiences and emotions can help support you during this process. Whether it is in-person get-togethers or online forums, there are many resources out there to assist.
Dr Danie Breedt is a passionate scholar-practitioner in the field of psychology. He divides his time between training, research and clinical practice. Danie works from an integrative interactional approach in psychotherapy, dealing with a wide range of emotional difficulties and sexual rehabilitation for patients with disabilities. He is the co-owner of Charis Psychological Services, a psychology practice that specialises in physical rehabilitation across South Africa.